Sunday, November 11, 2012

I Whip My Hair Back and Forth

Our little guy is turning into quite the dancer.  I wasn't sure if his little head wiggles were in response to music but our trip to mass this morning confirmed my suspicions.  His little head started wiggling at the beginning of each hymn.  So funny!

Here is a little clip of his "dancing."  I mercifully removed my audio (I was singing to him) so you can just hear the song, "Everything" by Michael Buble.  Hope you enjoy it!


Problem is, our little guys is also turning into a "headbanger".  He likes to lay on his stomach and bob his head up in down or, in some cases, smack it on the floor.  We have tried to discourage this, for obvious reasons, but he thinks it is funny.  I will try to get a video of these crazy antics too.

P.S.  He is starting to feel much better.  Thanks for the prayers!

With love.


Saturday, November 3, 2012

Testing James' Immune System

James had a rough day.  His intestines are pretty backed up so he hasn't been able to eat much.  I have been pumping him through with water and prune juice to try to loosen up his stool and get him back to normal.  Hopefully by tomorrow we will be seeing results.

Recently, we have been much more lax about germs around our house.  Since James' birth we have been extremely antibacterial lotion-friendly.  Actually, it had become my new best friend.  However, we didn't wanted to coddle his immune system forever and never let him build up a germ immunity.  So, we have been a little less cautious.  I still wash my hands every time I walk in the door, and use antibacterial lotion probably 10 times a day, but that is actually a step down from where I was.  I've also been much more lax about guests washing when they come in, but had made a pact to change that, now that flu season is upon us.

Well, too late.  James has his first major cold of the year.  He only had one other serious cold in his life, thanks to our diligent cleanliness.  Two weeks after he came home from the NICU it sent him back to the hospital for a month.

Our little man with a bad cold at one and a half months.

The good news is, he doesn't have a tube in his nose this time!  So, he should be able to breathe much easier.  And I am not sick due to the constant sleep deprivation of new parenting so that should also help.  :D  After James' stint in the hospital with his cold the doctors were very concerned about the strength of his immune system.  They weren't sure he could handle fighting small infections on his own.    I don't think that is true, especially now, but their words keep running through my head.  We will just have to keep our fingers crossed, pray, and get James good immunity boosting foods to help get him through.

If you have a chance to say a quick prayer for his speedy recovery that would be much appreciated.  We are hospital-free for seven months now and would like to stay that way.

With love.

Thursday, November 1, 2012

Why Don't We Have Pumpkins Year-Round?

James went to his first pumpkin patch this past weekend!  This time last year we were gearing up for heart surgery and a little more than cautious about staying away from big crowds.  It is so exciting to live "normally" again and celebrate the beauty of the season.  Check out all of James' new experiences:

James went down his first slide!  He didn't have much of a reaction.


I thought maybe his "Rody horse" skills would translate to the mechanical horse.


But, he enjoyed watching Daddy have fun on the horse and race car instead!




Then Granddad and Daddy got thrown in jail,


And he got to swing with Grandmom.


Then, a tractor ride!


 A friendly slide competition between Daddy and Grandmom,


And, most exciting of all, James' first pumpkin!


His eyes lit up when he got that pumpkin in his hands.  He loved the rough texture of the stem and the nice smooth texture of the pumpkin.  It is such an important sensational experience for him to feel different textures, especially since he isn't crawling and exploring as many things as most kids his age.  He needs to get the sensory input in any way we can find!


If pumpkins make my baby this happy I think we should have them all year round (along with those pumpkin coffees and pastries :D).


With love.

Tuesday, October 30, 2012

See Ya Later, Sandy!

James braved his second hurricane last night!  Poor little guy was mad that he couldn't go outside the house yesterday and I think he could tell that I was a little nervous which made him more fussy.  So, by the time the lights went out at 8 last night he was understandably spooked.  But we did have some fun with it before we got our grumpy bunny to bed:

Glowing toys are more fun in the dark.
 Then we all slept in the living room near the fire.  The power came back on around 10 last night.  Yay!


Here's a video of our grumpy bunny in action yesterday afternoon.  I guess he's already learned how to ham it up for the camera:


Stay safe!  We are praying for everyone's safety!

With love.

Sunday, October 28, 2012

Just A Quick Pic

We are frantically preparing for "Frankenstorm."  Take that with a grain of salt.  We did succumb and trek to Wal-Mart (ugh!) to purchase some non-perishables and we had to clear the outside of our little house, but it hasn't been hard.  I do still need to get some cleaning done and make meals for James and us adults in case the power does go out, but the stack of logs by the fireplace makes me think this may be fun.  Maybe.  We'll see.

So, as I shuffle off to clean the bathroom and blend sweet potatoes here is a quick picture to enjoy.  I call it "Morning Angel."  Hahaha.  :D


More soon, unless our power is out for days!

With love.


Friday, October 26, 2012

The "R" Word

Hi, all.  I started this post a couple weeks ago and have been struggling to finish it.

I have always found the "r" word (if you haven't guessed, I am referring to the word "retarded") degrading.  I began to hear it more often in middle school as friends used it as a way to flippantly brush aside moments of bad judgement or clumsiness.  It was "cool" to use this word because you could turn your every misstep into a joke.  I will, ashamedly, admit that I did slip into this habit a few times.  But, each time I casually used that word I felt revolted.  I knew that I was disrespecting a group of people who are already so often disrespected and deserve the dignity afforded to each human being.  I decided I would never use the "r" word.

It continued to bother me when others used it so casually.  But, what was I to say?  I didn't know how to politely point out that it was a rather degrading thing to do.  So, I just kept my mouth shut and retained my own principles.  Then, I had James.  My beautiful baby boy.  I saw firsthand what people were referring to when they used the "r" word.  But still, what do you say to politely point out that the "r" word is less than kind even if you don't mean it personally?

Here to finish what I started is a beautifully written letter by a young man with Down Syndrome to Ann Coulter who so frequently throws the word around on air.


An Open Letter to Ann Coulter

John Franklin Stephens

The following is a guest post in the form of an open letter from Special Olympics athlete and global messenger John Franklin Stephens to Ann Coulter after this tweet during last night's Presidential debate.

Dear Ann Coulter,

Come on Ms. Coulter, you aren't dumb and you aren't shallow. So why are you continually using a word like the R-word as an insult?

I'm a 30 year old man with Down syndrome who has struggled with the public's perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.

Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.

Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.

Because, Ms. Coulter, that is who we are - and much, much more.

After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me. You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.

I have to wonder if you considered other hateful words but recoiled from the backlash.

Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.

No one overcomes more than we do and still loves life so much.

Come join us someday at Special Olympics. See if you can walk away with your heart unchanged.

A friend you haven't made yet, 

John Franklin Stephens
Global Messenger
Special Olympics Virginia

Wow.  I couldn't have said it better.

With love.

Wednesday, October 10, 2012

Heart Check!

We went in today for James' last post-op heart check-up.  Yay!  We were so excited to hear that his heart looks good and he does need another check-up for a whole year!  Way to go, James!  There are still some pulmonary insufficiencies that we need to monitor as, over time, things could degenerate to the point where he needs a new pulmonary valve, but, if that happens, it won't be for awhile.  And our cardiologist hopes that by that time medical technology will have advanced enough to do this procedure in a catheter lab instead of open-heart surgery.

James has been doing really well!  He is settled into our new house and enjoys rolling all over the new floor.  He thinks the kitchen is a great place to make "floor angels."  He is trying so hard to crawl but just isn't there yet.  We'll keep working.  We broke out the baby backpack when he was really grumpy (teething, ugh!) and tried it again.  His legs fit through the right holes this time and James enjoyed being snuggled close to Mommy or Daddy.  It is actually much more comfortable than I anticipated.  He also went on his first train ride with lots of fun family members and enjoyed crabs in Annapolis (well, we enjoyed crabs, he enjoyed hitting the table).

James is using his highchair now!  Our good friends gave us padding that their daughter used for extra support in the high chair and it has been a big help for James.  The car seat wasn't cutting it anymore as James liked to hunch forward which doesn't make for easy eating.  Check out our happy, messy boy!

I like being messy!

Taking ANOTHER picture?!

Just kidding.  :D
With love.